Is it normal to dread the speech therapist coming??

[staryeyed]

Access to a speech therapist is supposed to be a good thing, but I'm not looking forward to it at all.

Last time she came straight in to the room and got in ds's face 2.5 ASD and messed his game up. I was like- WTF??!! She then told me that this is how she works. She didn't really give any useful information and just spent the rest of the time telling me her theories of autism. I'll give her the benefit of the doubt but I don't really know what to expect.

good grief. We only had a SALT once with ds (now 14). He was 3 or 4 I think and the woman spoke to him like he was a baby and then told me he'd never talk. Today he came home with an A star for his English test that involved discussion and debate so on her.
DD's (CP) comes every 6 weeks or so and does sod all except waste my time for an hour when i could be doing something else. DD is 3 and I read of SALT's doing blowing through straws and teaching to suck and helping speech. Maybe her SALT is an imposter?

Speech therapists, argggh. You fight for their services, then you get them then you realise how useless it all is.

My son's speech therapist, when she graced us with her presence, didnt teach my child ANYTHING. I did it all. She took the credit in her reports.

I dont know what they think will come of six hours speech "therapy" every six months. Its a total joke. There are inquiries in parliament about it and a brand new enquiry just launched this week about the lack of services into speech therapy for the whole of the uk.

My child has thousands of words, compared to last year this time when he had about 13 words in total. The SLT has never mentioned this, never mentions that he now can request independently, has excellent rececptive language. She continues to give him these ridiculous pecs based tests when he has absolutely no interest. The reinforcer she used last time was a glass of water. Wow, that really instilled in him an urge to do what he was told.

They set the bar so high for children with difficulties. if it was a child who did not have a speech problem, would that child sit at a table with a stranger and do a stupid test for a glass of water as a reinforcer?

Ours thinks she knows my kid even though she hadnt seen him for over half a year. She bounces in and sits down with him like she was his best buddy. He isnt that stupid and he didnt want to be around this woman.

He also can spot a fake a mile off.

When you do get a good speech therapist, they get pregnant!!! They are always on maternity leave. Then your kid goes on to someone elses caseload. Just call my boy johnny caseload.

speech therapy is a joke. If my kid had a broken leg it would be mended. But it seems that children who cannot talk dont need any help? arent important enough to teach communication to???

parents have GOT to start complaining big time to these people othewise nothing will happen.

We now have a private salt and he is fantastic, he was born to be a speech therapist. The work he has done with my child in 2 months would have taken 10 years for the other woman to complete, if ever.

I am surprised at that salt's approach

hmmm I have to say I don't really feel after a year of seeeing our salt she has actually helped my ds at all... but the early years support teacher he has is fantastic... so I feel he is getting help...

I sometimes feel like my son is a laboratory rat for the salt to observe... sorry I know this isn't helpful!

Oh dear.

Very sorry to hear this.

I'm a salt and would be absolutely mortified to think that I was of such little help.

You're right,six hours in 6 months is worth bugger all.

It's a dreadful situation and I speak as a parent too of a child with a communication disorder. Even I can't access any useful help. I do it all myself.

Keep on complaining (in writing to your PCT) and then there is a better chance of emplying more.

Mamad - whilst I really sympathise with your situation, I think that "When you do get a good speech therapist, they get pregnant!!! They are always on maternity leave." was a bit harsh - they're entitled to have families like everyone else.

But I know you were just venting - my best friend's a SALT (and a REALLY good and lovely one) and not long back from mat. leave, so I felt I had to defend her honour! So sorry you and your little one are having a rough time. Hope things pick up soon.

Habbi,it's a bloody nuisance when they clear off though.

I know,our office is like the marie Celeste as they are all breeding madly.

Do you thinka private one would be able to help a child who can't speak due to severe CP?

feel a rant coming on about all this. It seems like the more severe a child is, the less they get. DD has a visual impairment. Now, if a non-CP child had vision problems they'd get assessed and probably get vision therapy because generally they don't just let kids go blind. Yet dd has had 4 sessions of vision therapy in 3 years despite her rather severe CVI. Same with SALT. She can't speak cos of her severe CP but we get bugger all help. Physio - she is very stiff and classed as 'severe and involved' yet the physio comes one hour every 3 weeks. 16 hours a year!!! OT, even less.
But non-SN parents have this assumption that when a child becomes, or is born disabled there is lots of therapy and help. I spend more hours on the phone chasing this stuff up than the actual hours we get!
I have written endless letters to me MP and to the Dept of Health and its all crap and its wrong. If you have money (like call me Dave) you can pay for whats needed.
Sigh. I am ticked off by all this and by the fact that although dd only has a 50% chance of reaching 18 and has a life expectancy of 30, her Paed refuses to refferr her to LifeTime Services (criteria - child is unlikely to make 40) because they are over-run and he says 'Oh, if she makes 20 then she#'ll probably make 40 so she doesn't qualify'
WTF?!
So we pay for Brainwaveourselves, and will pay for The Scotson technique and will fight for LifeTime and Hospice help (my friend gets that and her son has no physical impairments but has Lennox-Gastaut syndrome. DD has severe CP AND a dx of LGS)
rantrantrantrant

Sadly our semingly lovely SALT ahs vanished after the assessment period- Paed had requested for him to be seen by her Manager so I dont know if she took offence or what but she just vanished.

But the vast majority of SALT's are great, just overworked. My friend is a SALT down in Devon, and in her 12 hour week she has 100 hours of workload to contend with!

Need, I have offered you advice in the past.
You need to talk to the people at Inclusive technology (fantastic company) and ideally you need a salt who specialises in A/AC (alternative/augmentative communication)

If you are willing to go private,I will put you up a link for reputable registered s/lts.

You need to find one that lists this as area of expertise.

SALTS in independent practice

sorry you are finding it so unhelpful. I dread the SALT visits but more because they are the source of bad news (your DS is still severely delayed Mrs X),etc. I suppose it's easier dealing with someone you pay privately as you feel more able to be assertive.

Needmore - re:blowing/sucking etc - a book I was reading recently about children and speech problems suggested that SALTs were divided as to how much blowing bubbles and that sort of stuff was actually helpful to kids with speech problems, so it may be that your particular SALT doesn't believe in it. Moondog will know more about this I am sure (and will hopefully correct me if I've misunderstood anything!)

I did look at the Inclusive technology Moondog but all of it seemed to require vision and some movement. Plus pots of cash.
I also called the 'facilitaed communication' people but dd is too young.
But if there are SALTS who have techniques for someone as severe as dd then I'd look them up. One thing is that I need is honesty. We are on benefits.

Need,ask if you can chat to someone about your child's needs.
They are incredibly helpful.

Total, I mostly work with non verbal people who need an augmentative/alternative approach to communication so my days of doing that sort of work are in the mists of time.

Yes, opinion is divided but some fairly convincing research as to the benefits of sucking/blowing etc came out not so long ago.

needmorecoffee. Does your dd go to sn nursery?
Are you in touch with any pre school outreach services from the local sn schools?

We have used their services & have helped with advice, loaned toys & even slotted us in to school physio hours to increase ds2s physio.

ds2's friend is in reception (split placement), he has severe quad CP, Severe VI, tube fed etc but by using the sn school he has regular daily input from all the therapists & has been introduced to switch technology & they offer a home loan service for equipment.
once he goes full time (not sure if he will keep on split placement yet) he will also get regular hydro & be eligible for after school clubs which will give his mum a little more respite.
Just a thought it may be a way of accessing some more therapy & equipment from your dd

For us, because my child is in a mainstream nursery, he is on the back of someone's caseload, always. If he was in a "special" school, (which has been suggested to us ad nauseum) he allegedly would receive an integrated program of speech therapy.

He is being penalised because we didnt throw him into one of these schools.

I think the figure if he can cope in a mainstream nursery that he doesnt need the help?????

Speech therapists know the system stinks. Its their responsibility to do the screaming if they want their work load reduced. I dont know, but if I was a speech therapist, able to provide only half of what I was capable, due to time and money constraints, I would be very unhappy with myself and my profession.

All the complaining can't be left just to us, as parents.

I would rather have nothing, than a watered down version of nothing.

MONEY - yes this is a big factor. When we were using ABA and remortgaged our house to pay for it, we set some aside for emergencies and that is what we are now using for private SLT. We are saving the government thousands every year. They have us just where they want us.

Most of the work we do with our child, however, we do at home. Home is where he spends most of his time, and no speech therapist is going to come along and magically change things for our child via 1 hour a week.

Same for OT and the rest. We bought the verbal behaviour manuals and other books/manuals and we use them as a guide to working with our child. Its not rocket science.

Complacency is our biggest enemy and the government banks on parents being complacent. I doubt there are few parents complacent about their children's needs, rather it is pure frustration to the point of being stymied.

Trouble is mamadadawahwah, that the SALT I know and several others aren't happy- so are leaving to go private. I can see their point, but at the same time that reduces access to people like NMC< and indeed us, who just cannot afford more private input- the BIBIC is all we can amnage atm, and it will less next year as I won't be bringing in an income at all. the BIBIC stuff is fabulous, nad has for us amde the difference between non-verbal and limited verbal, but there are still huge gepas- and those are unikely to be filled as far as I can see.

It's nto just SALT either- at the age of 4.3, DS3 ahs recieved NO therapy or support after assessment level from ANYONE (bar BIBIC). The neww LEA early eyars SENCO is trying to sort some emergency provision- becasue when he rpogresses in one thing he steps back in another, so for example some language aquisition has equalled loss of faecal continence. But he got dropped off the OT list becasue school didnt get the form (sent to them in the summer hols) back in time.

yes Max, dd is at SN nursery and ts just as hopeless there too. I keep hearing of wondrous places with lots of input and I want to move. Bristol is hopeless. We've never had hydro because the physio dept ran out of money.
They wouldn't even loan us a switch so we had to buy one. Have applied to a charity for help with buying more switches and computer type things. DD is still waiting for a 'switch assessment' to find which would be the best one so we had to guess.
I do what I can myself. dd has a massage first thing to loosen her up. Then Medek type physio with stretches etc. Then we sit her in her chair and either help her watch TV or try and play with the switch or we go for a walk where I show her everything and touch her hands to it. I do it non-stop but sometimes feel I'm guessing. Hence we're off to Brainwave to get some structure as I don't really know what I'm doing. We did teach her to eat as the feeding clinic had an 18 month wait (despite dd losing weight and choking on her food. They just wanted to stick in a tube) but she now eats well. Slowly to be sure but she eats. I ust can't see how to teach her to speak/communicate. She will make a 'ah' sound for yes although it can take up to 30 seconds with her straining to get it out (she has trouble initiating movement/muscles) and we're currently nodding or shaking her head to see if we can teach her that. She is bright but doesn't always 'get' what we are trying to do as she has no body sensation or awareness and some processing issues.
Brainwave has SALTs so I am hopeful we'll learn something useful rather than floundering in the dark as we are doing now.

for CP have you considered HBOT (oxygen therapy)??

We used it for a while with our boy who is ASD. Unfortunately, he was too young and wouldnt wear the mask for the whole hour.

You might want to look into this and convince your local HBOT centre (contact the MS society or the local sports clinic) to take your child on.

HBOT Hyperbaric Oxygen Therapy - look it up on google. Perfectly safe. One of the best consultants in the world regarding HBot lives in Scotland. Will find out his name for you if you are interested. He will speak to you about it.

Parents have had amazing results with it for kids with asd's.

NMC Dh doesn't do switches, but if you ever need any of the light controller things thats ensory rooms use, e-mail us OK? Dh sells those and I am sure can find you a spare - (own business before anyone gets anrky about stealing!)- we didnt really consider that as a route but a special school bought one off us for that purpose yesterday. I bet he could work out a way to rig up the cheapest possible setup for you.

Bristol is known to be poor isn't it- after all there was that poor chap and his son with DS, who died a few weeks back - ahrdly a sign of high input levels.

Mama, as a salt I am NOT happy and do plenty of complaining.I love my job but have considered leaving (the huge caseload,the hours driving,the aggro,the frustrated parents,undertrained school staff,the list goes on and on).

However i want to change the system as much as I can and figure that is more possible within the 'system' than without it.

I am involved in a full scale war with the powers that be over some stuff and am fidghting with the parents on this (can't say more as am very easily identifiable.)

I feel for you all,I really do.
Sorry that we have all let you down.It isn't good enough.

Well I have to say - not as bad as I thought but completely not on the wavelength. wants to put aside PECS and I dont agree. I was so looking forward to help with PECS- never mind have to do it myself I guess.

Moondog. Please don't apologise I wish you were my SALT.

moondog, i agree, you cant change the system from the outside, but sometimes its unbearable to work from the inside and i can see you are equally frustrated as some of the parents you know.

its just not good enough, and i have no idea when or how things are going to change for our children